“I must do the thing …which you think you cannot do”
I try, but it’s extremely hard to stay upbeat with the campaign to save Chloe, when everywhere around me I am reminded of all the things that she may never have the chance to do.
This is just one tiny glimpse of what consumes me every day:
Something that should have been a very happy, proud moment for me this morning, unexpectedly turned into the complete opposite. Chloe’s older sister Madeleine (Mads) has been selected into both the CAPA (Creative and Performing Arts class) for drama and the Enrichment class for academic achievement at Woonona High School. Mads is really excited, as she should be and she has chosen the Enrichment class for year 7.
Having my Mads “hat” on, quite happy and proud, I was walking into the high school this morning to submit her enrollment form, when all of a sudden all of these thoughts and emotions started flooding me — I just couldn’t stop them.
You see Woonona High is quite hilly and unless a great deal of work is undertaken at the school, it really wouldn’t be suitable for a wheelchair. I was looking around thinking of what would need to be done to make it wheelchair accessible for Chloe to be able to attend the same high school. Then I start thinking that Chloe may not even live long enough to make it to high school…that’s when I came undone.
I felt like my heart was being ripped out of my chest, I couldn’t breathe and just cried and cried. I try not to let it happen too often, but I was just completely overwhelmed by the thought that it just wasn’t right — Chloe’s life just isn’t right — this is not how it’s supposed to be for her or for us. Our life isn’t supposed to be completely consumed by a campaign to raise $2.6 million to try to save her — but it is.
I then went to the local shops to pick up a few things and Chloe’s Rainbow was everywhere. I am extremely grateful for this support and usually it makes me feel positive and happy knowing the community is behind us, but today it just reinforced how not-normal our life is.
Sometimes (okay, a lot of the time) I just wish our life was ‘normal’ — no disability, no terminal illness — I want to turn the clock back to before we found out Chloe had VWM. I wish… every second of every day that I had never heard of VWM.
Help us fund Prof. Orna Elroy-Stein’s work. Your donations will fund the science that saves the lives of children. This includes the research of Prof. Orna Elroy-Stein. Even if it’s a small amount, please consider donating:
1) http://www.savingchloesaxby.com/
2) https://www.crowdrise.com/FindaCureforVWM
3) By check to : AFTAU
39 Broadway, Suite 1510
New York, NY 10006
Attn: Joe Huber/Orna VWM research
**Note: All 3 ways above go directly to Prof. Orna Elroy-Stein VWM research ****
Written by Chloe’s mom.
